AONM/Armin Labs Warning
Posted , 16 users are following.
Hello
I've just registered specifically to do this review on AONM who organise private lyme testing in the UK. They are partnered with Armin Labs in Germany and from what I can tell are very popular with patients in the UK wanting to get a private test done. I unfortunately have had a horrible experience with them.
My situation is very similar to others, I have been misdiagnosed for the past 6 years with CFS but displayed all of the symptoms of LD, plus a few more. After all the press coverage this past year on Lyme Disease I did my own research and went to my GP ... you know the story and so obviously I ended up having to look for private testing. I got most of my info from the charity Lyme websites in the UK, they gave a brief overview of the tests and I chose AONM/Armin because it seemed so much easier to use and organise. As a chronically ill person I wanted this to be as painless as possible. Also I had heard a lot of patient cases where they got a positive result from them and there didn't seem to be any bad reviews anywhere. Now I really wish these charities display customer reviews on their website because I had a terrible experience with them and to top it all despite the positive results no doctor will take them seriously. I have just seen an amazing infectious disease specialist who ordered all sorts of tests to be done and explained why he can't trust Armin's tests because their use of CD57 results to indicate Lyme is not medically correct. CD57 can be raised in some infectious diseases but low in some auto-immune diseases. There is a real worry that people are suffering from other diseases or coinfections that are responsible for that result but instead are treating Lyme's. I also voiced my concerns with a number of the Lyme charities in the UK and they confirmed the doctors issues. Infact one replied saying they don't reccommend Armin Labs at all and they are gravely concerned why AONM are promoting them so much and pushing patients to go there, particulary because of their high rate of positive results for LD. In summary Armin Labs don't use tests specific for LD, the tests used are not licensed for diagnosis of LD so no UK doctor will believe them and therefore unless you are willing to shed out more money for private treatment, incidently AONM send you a nice pdf of recommended private health practitioners that can help your treatment along with your results, that £400 was pretty much wasted.
I understand more than anyone the need for private testing, I'm young and the illness has taken away more opportunities away from me than I could have imagined. I had hoped that by getting a result I would atleast know what I'm fighting and can change my lifestyle to treat it accordingly. That's not the case and if it weren't for the new infectious disease specialist I have got to see I would be getting worse and worse. The £400 I had to raise for the tests was a significant amount like it is for most of you, my family sacrificed a lot and I did to including a place at university, AONM doesn't care about that however. Once they have your money they are not interested in providing customer care. I've summarised my experience below with them and I know this is already a long post so I won't take more of anyones time. This is also going to probably cause a lot of controversy because of their popularity for private testing. I am offering my opinion and review of them as a customer in the hope that others can make a more informed decision when they decide to test.
In two separate instances they failed to deliver my bloods to the labs in Germany through next day delivery. I had to get blood drawn twice and wait more than three weeks for results. They offered me no compensation or refund on the cost except for that of having to pay to get blood drawn. The first attempt of posting I checked the tracking of the parcel and had to make them aware that the bloods had not arrived a week after they were sent. They confirmed this and when the bloods eventually arrived they were 7 days old and nonviable. I had to get bloods again and send it off again, all organised by myself. Again the second time of posting bloods I had to make them aware that the bloods weren't picked up and when they were eventually they would arrive too late to be of use. The fact that this company is so popular for sufferers in the UK has not at all helped them in treating customers fairly and efficiently. They could not handle the situation when things went wrong and if it weren't for me constantly informing them of the situation I would never have received the tests. They take the fee from you directly for FedEx delivery therefore it is their responsibility to ensure FedEx is doing their job and not mine. They refused to accept responsibility for what happened and did not follow up the complaint to FedEx, I have never received a call or apology from FedEx which they said they had told them to do. Also when I complained to AONM they were more concerned that I was telling them they were doing a bad job than they were about how their lack of professionalism has affected my life. The huge amount of money and longer than expected wait caused stress, made me miss my university place and getting bloods drawn twice made me ill. They said sorry but made it clear it wasn't their fault and there was nothing they could do about it. As the company you're paying they are the only ones who can do anything about it. They were more than happy and quick to take my money off but as soon as there was a problem it took forever to sort out. I would advise anyone considering using these people to look elsewhere. I could forgive the first mistake but the fact it happened a second time and they had to be pressured to sort things out by myself makes me lose all trust in using them as a company. Many sufferers will have waited weeks, months or years to do this private testing, the tests are not cheap at all and the impact on people's lives are significant. This company is fine if nothing goes wrong but if it does, then there's no chance of you getting what you paid for unless you're willing to sit on the phone for hours and track the parcel 24/7. Their assurances of this has never happened before means nothing, things are expected to go wrong and it's how they deal with it when they do is what matters. They dealt with this horribly and the results although positive were not worth the struggle I had to go through. The whole point of private testing is the issues faced with the NHS testing and non-Lyme literate doctors, private testing is supposed to be easy and stress-free, that's what you're paying for. Don't use this company if you want reliable customer service. If they choose to use FedEx with its problems then that is there fault and it should have no effect on the customer using AONM, sadly this is not true and the only person it does affect is the customer. FedEx get their fee paid, AONM get their fee paid, the customer loses out.
As a single customer I have no way to force them to right the wrong they did and the effort needed to do so is far beyond my capabilities as a chronically ill person. Large companies like FedEx and AONM/Armin Labs exploit that inability of the single customer to really do anything significant about bad service, I feel like leaving a review of them and getting others to think twice about using them is the best I can do.
0 likes, 16 replies
c60211
Posted
An update to this: AONM contacted one of the charities and said I had been given a "apology" and reminbursement. This is not the case at all. They have maintained that it was FedEx's fault but fail to answer that by paying them the FedEx fee it is their responsibilty to ensure FedEx does their job. Also they offered no reimbursement for the cost of testing or FedEx fee whatsoever. They paid me the costs of having to take bloods twice privately and that is all, this was not out of their pocket, when the bloods first didn't arrive their person on the helpline informed me FedEx was paying for the blood taking fee. AONM have not reimbursed me anything and I am now extremely angry and upset that they are telling Lyme charities that I have received such things.
marie62224 c60211
Posted
I am so sorry that you have had such a bad experience. It adds to the misery.
If one is even thinking of having a LLD test abroad one must ask one's GP first that if the test should prove positive would treatment then be available on the NHS? The answer I got was No.
In which case if one can't afford treatment then there is no point having the test abroad.
I have been toying with having a test by but the cost is too much and it was only for my own vindication that I wanted the test.
So you have put my mind at rest and saved me wasting more money I don't have.
It is good to hear iof others' experiences.
Hopefully you can heal yourself by building up your immune system and eating only those foods that help you and avoiding all sugars and carbohydrates. Take whatever supplements are recommended especially vitC and Vit D . Drink plenty of water with lemon juice and have salt. All these things have helped me.
Did your test from Porton down come back negative?
c60211 marie62224
Posted
Thank you Marie! I think that's the key thing, I tried explaining to them how I needed these results for university but it was ignored. My GP was ok with me testing privately but more I think because she thought they would be negative, however she did refer me to the brilliant doctor I am with now.
It is a huge amount and like you said it's good to know others experiences, even if it was positive if the tests are not able to be used then there is not much point.
I hope I can too, I've already started at VitC and D protocol as well as detoxing with activated charcoal and epsom salts so fingers crossed. Thank you for your advice!
The doctor I have just seen has sent my bloods off there now so I'll get my results in a couple of weeks. I was refused NHS testing by my GP originally so that's why I turned to private.
Best of luck with your journey!
marie62224 c60211
Posted
Despite your bad experience it has been useful in that you now have a positive result and will be treated,
Good Luck and get well.
.
fat_fingers c60211
Posted
I'm sorry you had a bad experience. I had no problems at all, received results within days via email. Armin lab tests received accreditation this month. I think if you research tests used by RIPL you will find their tests are not accredited
c60211 fat_fingers
Posted
Thank you, I know I was shocked when it all happened as from what I could tell no one mentioned any problems getting results. I'm confused by what you mean, is Porton Down not accredited or do you mean the Western Blot test? I understand they have low sensitivity and false negatives but the lyme charity told me that the new tests used by Armin aren't proven for lyme's. I'm more concerned about the treatment I was given when things went wrong and that despite their accreditation UK doctors still won't accept the results. I feel like its wrong for AONM to push them so much when they are aware that the results will not be considered by most doctors.
marie62224 c60211
Posted
Porton Down is where the NHS Ld tests are done now (or so I was told).
They must be accredited and their results are accepted but these spirochetes are very hard to detect once they are in the cells. so many will come back as false negatives or false positives which doesn't help much.
Mine came back neg. Though I haven't actually seen any piece of paper yet nor whether they tested for co infections.
More tests come back positive for Ltme and co infections from Armin wheras quite a few say they have had tests come back neg from Porton Down. This just means that either they haven't got Lyme or it's not been detected.
And some GP's do accept results from German labs so nothing is all cut and dried.
You can read all the websites and the scientific papers published but they don't seem to have found a simple test yet done by the NHS that is totally relaible.
Would you have been well enough to start university this year anyway?
Maybe another year will see you well on the mend . I hope so.
There is a Porton Down site you can find further info on
.
If the tests are so reliable then why are so many of us all having the same symptons and feeling so unwell yet testing negative?
I hope you will get some reimbursement.
Some Lyme sufferers get the German test simply because they want to know and then they go for private treatment.
We can't do that so have to rely on our GP who will either help us or not.
vicky89033 c60211
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vicky89033 c60211
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Lilliepop c60211
Posted
I am having a bit of a disagreement with them at the moment. My husband had test done at Arminlabs and when we got them back couldn't make head or tail of what they meant. Anyway took the results to our GP and she didn't understand ether. She then sent them to a microbiolgest who dismissed the results as rubbish and said what they say my Husband has wrong with him it's a co infection and most people have this bacteria in them and it's not serious.
The worst thing of all is we paid £700 for a result that isn't any good because the clinic hasn't been accredited so no Doctors can recognise it.
So what is the good of it. I go on Facebook Lyme disease and have put my views on there and really they have told me In a very polite way to shut up. There have been a few that are not sure about them but seem a bit worried to say.
I must say I don't think it's the clinic in Germany thats at fault but the people that deal with it in the UK. They should warn people that armin clinic hasent been accredited yet and then we can make our own mind up.
marie62224 Lilliepop
Posted
Oh dear what an awful waste. But irt's those co infections the Borellia Babesia etc that cause the problems.
My son says those spirochetes are not found in the human body and cause havoc when they are. He says they are found in stagnant water and such(and in mice and bird mites and the ticks etc.
How anyone can say these bacteria are not harmful I cannot fathom.
Scietific reserachers say they are like malaria and ST diseases.
Maybe those with strong immune systems can fight them off but others cannot
Gp's don't understand teh results as they are mostly unfamiliar with Lyme which mimics so many other things. Fibromyalgia for instance.
Did your husband have the test first done at Porton Down.
I know nothing about Armin clinic except that I was going to have their testing but finances did not allow and even if it had come back positive my GP would not have treated me anyway.
They usually need a Porton Down positive test or to see the tick bite/ rash etc in order to treat people.
It seems to me from what you say that there is no good even bothering with any except that approved by the NHS.
What was the co infection your husband had ? Did they name it?
And if certain bacteria make so many people ill how can it be harmless.
It would e interesting to know how many people have been tested by Porton Down or German or American labs and had positive results and then who have been treated sucessfully by NHS?
What will your husband do now?
Lilliepop c60211
Posted
There really isn't anything my Husband can do now. Got a long email from Aonm they are the people that work for Armonlab telling him off in a very polite way because she had read what I have said and I'm being very unkind. I have not said one wrong word about Armin labs I'm sure they are doing a good job, and thank god for them to bring Lyme disease to people's attention. I'm saying we should have been told about the clinic not being accepted yet so there results are worthless until they are. We might have looked else where if we had been told. We would deffenatly have had the test done there otherwise. He was tested positive for chronic active infection with Ehlichia/ Anaplasma & chlamydia pneumonia. And advised to have treatment in the few weeks. Where! I would like to know, the NHS won't recconise the results, have to go private again more money that we can't afford. And the place we wanted to go to Breakspair Hospital won't recognises them. So in the mean time my Husband is very sick with no help from anyone.
Please everyone be carful when walking in woods etc check your dogs when they come in they can get very sick and even die. Tuck your trousers in your boots cover up as much as possible you do not want to get this very nasty disease believe me. Take care😱
jo14004 c60211
Posted
Hello, I know this is quite an old thread now, but I was interested in reading about your experience as I decided today that, after 9 years of 'fibromyalgia', enough is enough and I'm going to send my blood off for testing. Knowing which co-infections to be tested for was the only thing worrying me until I read your post! I've pretty much sorted getting bloods done (not by my GP) and my head in the right place. I've started coming off prescription meds and trying a more natural approach. I was diagnosed with B12 deficiency recently and will have the second of 6 'loaded' injections tomorrow (the remaining 4 over the next 10 days) then it'll be every 3 months, for life from the sounds of it. I'm seeing my GP again on the 16th May and there are a number of things I want to discuss but I don't think chronic Lyme will be one of them (even though I'm convinced I must have it based on the fact that our daughter has been in remission for just a year from Lyme and spotted fever rickettsia - tested at Porton Down - following treatment for 3 years with three abx simultaneously). If it turns out that my B12 deficiency is caused by pernicious anaemia, I'm going to be unsure about what to do, since that would mean I have an auto immune disorder, which would have an impact on the test result presumably? My symptoms have worsened so much in the last two years, especially in the last 9 months. I now have worrying new heart/respiratory and neurological symptoms, along with increased and really debilitating exhaustion; worrying symptoms to me anyway - apparently recent tests show nothing wrong.
cheryl44643 c60211
Posted
I'm nothing to do with AONM, but have used them for testing. My son and I have late stage Lyme. I feel I must offer some balance here. The late delivery of bloods is down to Fedex or whichever courier you use and is beyond the control of the lab. Any reimbursement offered by AONM would therefore seem more than reasonable and an exercise in public relations.
With regard to the rejection ot the results, this is an unreasonable response which is occurring all over the UK as our doctors are trying to save face. UK DOCTORS ARE ALSO REJECTING RESULTS FROM OTHER LABS, NOT JUST ARMIN LABS. Different reasons are given, none of which hold water if you understand anything about the science. I do. I used to be a physiologist. Several GPs and an infectious diseases consultant all gave different reasons, all twaddle. The Inf Dis consultant spouted "facts" more than 30 years out of date.
I doubt very much that Armin labs actually claimed you had a positive test based on CD57 assay. I had a low CD57 assay which they simply reported as an indication of a degree of immune system compromise. CD57 is the designation of a type of receptor found on imsys cells in response to Lyme.
I found AONM and Armin labs to be very helpful and honest, advising me against unnecessary tests to save me money.
THE PROBLEM IS WITH UK DOCTORS, NOT THIS LAB.
nina47550 c60211
Posted
I am suffering too and was hoping you could share the name of the private doctor who is currently treating you. As you know, it is a nightmare to find the correct help.